Streams

The Rewards and Challenges of Being a Caregiver

Wednesday, December 12, 2007

As baby boomers age and wounded soldiers return from Iraq, more and more Americans will be caring for ill family members at home. Andrew Solomon and Susan Lehman are contributors to the new essay collection, An Uncertain Inheritance: Writers on Caring for Family. Nell Casey is the book's editor.

Event: Nell Casey will be in discussion with Frank McCourt, Abigail Thomas, and Andrew Solomon, moderated by Dr. Anne Renne Testa
Wednesday, December 12 at 6 pm
Columbia University Teachers College
Milbank Chapel
525 West 120th Street (between Broadway and Amsterdam Avenue)

An Uncertain Inheritance is available for purchase at amazon.com

Weigh in: Tell us about your caregiving challenges and rewards. What's your situation?

Guests:

Nell Casey, Susan Lehman and Andrew Solomon

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Comments [21]

Linda from Nassau County, LI

The biggest mistake I made while caring for my parents in the last five years of their lives was not communicating clearly with my brother about their conditions as they deteriorated. I assumed he saw the same problems I did since he visited them weekly and that he just didn't want to be more involved in their care then he was. When things finally became critical, I learned that he was not aware of their true condition because they managed to put on a good show of normal functioning during his visits, only to fall apart afterward.

When I finally directly asked for his help, I not only learned that he was truly unaware of the extent of their deterioration and my efforts to keep them afloat, but he was more than willing to participate in their care. We eventually moved them to an assisted living situation and ultimately they needed private round the clock care in addition and fortunately they had the money to cover their expenses but we still needed to be constantly involved to make sure they were properly cared for.

Having my brother as a partner in their care during the last year of their lives was invaluable and my only regret is not having discussed the problem with him sooner.

Dec. 13 2007 10:45 AM
Billie Biederman from New York City

Dear Leonard..
I caught some of the broadcast today when you and your guests discussed caregiving. There was no time left for me to make a call on the subject.
I was a caregiver for my remarkable mother and have written about the experience which I am about to self publish.
It is not a how-to book but a sharing of our story with the baby boomers who are facing the role reversal stage.
It is informative, touching, often hilarious and a good read -- according to Hugh Downs and Carol Burnett, who have given me cover quotes.
It is in the final prep stages before going to an on line POD service.
When it's ready, I hope your staff will check out a copy. It's called "Hello Mama Goodbye" - and subtitled Memories of a Caregiver. I was one and Mama was one.
The stories will hopefully help many who are at that stage of life.
Love your show. Been listening for years.
Best wishes.
Billie Biederman

Dec. 12 2007 05:58 PM
PROFESSOR BAHADUR TEJANI from 191 WALLACE STREET,FREEPORT,NY,11520

Dear Leonard, A very difficult subject handled with senstivity and care by you. Having been on both sides of the challenge, I know. While taking care of our aging parents, my constant refrain to the caregivers, maimly my sisters was, "Let this thing not divide us". But it did. Everybody was so so tired. Now it is my Parkinsons facing us. Luckily we are all more experinced now. But it is still dividing us, specially the caregivers. I will mail them your enlightening program.

TEJANI

Dec. 12 2007 03:46 PM
audrey from nyc

I'm responding to SM's post(#16). You broke my heart when I read what you wrote. Even though my mother is home, I came close last year to placing her in an nursing home. The second I walked in the home for a tour, I started to cry. I don't know if your mother qualifies for medicaid and round the clock care, but feel free to contact me at agsente@pipeline.com if you would like any information. I'm not a professional but I'll share with you what little I know.
As for feeling that she is slipping away, never lose hope. We've experienced some small miracles with my mother(also alzheimers); sometimes its one step forward, two steps back. But other times one step back, two steps forward.

Dec. 12 2007 03:44 PM
chestine from NY

we had a senile great aunt - my mother's favorite aunt - when she retired, she moved near us. We had a big house and a big family and it worked out for all of us to share the burden. She brought our family together, providing hours of mostly funny stories to tell about the experience - she was fit and out of it - and taking care of her was like havign another kid in the house. But she was always pleasant, even when confused. But this job for one person? Staggering.

Dec. 12 2007 01:23 PM
SM

My mother has Alzheimers and is currently in a nursing home. I cry each day wishing I could afford to care for her myself. However, I wouldn't be able to feed myself if I did that. This is a nest of poor choices. There seems to be no help for it.

I feel her slipping away from me each week I visit

Dec. 12 2007 01:23 PM
Otto from Brooklyn

there are natural remedies for depression which are demonized in order for the pharmaceutical industry to fleece and sedate the working masses. the natural source of anti depressants/SSRI's/anti anxiety pharmaceuticals lie within nature. do some research into DMT and natural MAO inhibitors.

Dec. 12 2007 01:16 PM
Natalie Levinson from NYC

I run a free, twice a month, support group for Cargivers to Elderly (parents).

Call me at 212.288.1831.
Natalie Levinson

Also, Mr Lopate mentioned the difficulties o oldsters in coping with NYC public transportation. But many oldsters find great difficulty driving their car safely and often move into the City for access to shops and services on foot or using busses and and cabs that are not available or very costly.

Dec. 12 2007 12:44 PM
Tomas from Bergen County, New Jersey

Depression is poorly understood by the general public. Those who suffer from mental illness are marginalized at best, cast off at worst.

When I shared with certain friends and family members my story about my life long struggle with depression and anxiety I was presented with religious solutions, rejection that I was depressed, and denial of my condition.

Few were empathetic.

Dec. 12 2007 12:43 PM
Anonymous from NYC

Re medication: in my experience I found that the meds "cancelled out" the extreme ends of the emotional spectrum. So while they prevented the episodes of extreme sadness and anxiety, I also found I was not having any moments of "extreme joy" either. Don't get me wrong, I will take my current state over severe depression without question. Still, it's hard to remember the last time I got REALLY excited or WILDLY DELIRIOUS happy over something.

Dec. 12 2007 12:39 PM
Jane from NYC

Is the situation for those of us who do not have the financial ability to install our ailing parents in our own or nearby apartment, is the situation in nursing homes as bleak as Ms. Lehman portrays?

Certainly there are places where conditions are awful. But I know of others where the employees are caring, the residents are not miserable and abused, and relatives do not feel that they have abandoned their loved ones to one of the circles of hell.

Dec. 12 2007 12:33 PM
Victor Escamilla from NYC

I would invite you to discuss how to finance the care giving to your parents. As a financial services representative, I have noticed many of the "sandwich generation" lose their savings to pay for the care of their parents. I have also seen spouses lose their nest eggs to pay for the expensive home care of their loved ones. You may want to discuss the options of long term care insurance and how it can help you avoid spending down all your assets to finance the care. If you purchase a policy when the loved one is relatively healthy (and relatively young, in their 60s) it is a wise "investment" should the loved one have the need for care later. Maybe this is a topic for those who do not yet have a long-term condition, but yet, I think it's important to discuss the options you have to prevent the expenses you'll have to pay for your parents (or for yourself).

Dec. 12 2007 12:30 PM
Henrietta from Manhattan

Part of caregiving is navigating our fragmented, expensive, and dysfunctional healthcare and insurance bureaucracies. It is a full time job in addition to caring for your sick family member. In my opinion, privatizing everything is a huge mistake and will mean that most people will not have the time, stamina, or knowledge to make effective choices. Especially in stressful situations.

Dec. 12 2007 12:29 PM
Robert from New Jersey

When I feel I am losing my patience with my hadicapped spouse, I think of a radio ad I heard a couple of times for an organization called "Handicapped and Alone" and imagine my wife in that condition. It really serves to remind me of my responsibilities and usually I resist the temptation to say something I will regret. Usually.

Dec. 12 2007 12:27 PM
Paul Polakowski from Ozone Park, NY

The timing of this program could not be more appropriate at this time in my life. I'm 32 and for the past 10 years, I have been the primary caregiver of my grandparents. Their only child (my father) passed away at an early age.

I can't begin to articulate the impact of this caregiving experience on my life, which I assumed at an early age (22) and have been doing for most of my adult life. Perhaps I will oneday memorialize this experience in writing, but for now, I offer the following.

A few weeks ago, my grandfather passed away suddenly. At 92 years of age, he was suffering from blindness and severe arthritis. His passing has brought mixed feelings, but prominent among those is a feeling of relief. Relief that my grandfather is no longer suffering, relief that I'm able to finally place my grandmother in an assisted living facility and relief that I'm finally able to live MY life without the caregiver burden. I served my grandparents dutifully for years and for this I am so proud. To all the caregivers out there, feeling that you've given 100% of yourself to your loved one is something that few will understand, but it's something of which you'll be proud until your death.

Dec. 12 2007 12:26 PM
Connie Colvin from Jackson Heights, Queens, NY

I was a caregiver to my mom who died April of last year, and it probably was the hardest thing I ever did. She was in dementia, I had to feed and change her, she really got as bad as possible. I am not well myself, and now worse, I think the whole thing has gotten to me now. I have many ailments. I miss my Mom terribly, and yet, believe that it was and will be the best thing I ever did. Christmas will never be the same. I could write a book about it all and maybe I will someday, if I live. I saw things in my mom that one should never see. I think a lot more should be done to support caregivers, for sure.

Dec. 12 2007 12:26 PM
Helen Bowers from Westchester/Putnam NY

Not only is there extreme stress on the person being cared for, but also on the caregiver.

We have formed an organization called Senior Concierge Services that gives a respite to the caregivers of both seniors and those seriously ill by helping orchestrate daily living and medical visits.

www.seniorconcierge.org

We cover Westchester and Putnam Counties and are eager to help.

Dec. 12 2007 11:45 AM
audrey from nyc

Shortly after my mother was diagnosed with alzheimers in 2000, I started CareShare- an online forum for caregivers. I wanted a place where caregivers could to share, ask, inform, and gripe anytime from anywhere. Personally, I've done some of my best worrying at 3am. The internet never sleeps; and sadly, the same can be said for many caregivers. And we are such a great resource for one another. Who better to learn from?

You are welcomed to visit the site and read the posts. The subject matters are still relevant, whether they were posted in 2000 or yesterday. The address is http://forums.delphiforums.com/careshare

Caregiving is tough enough; why go through it alone?

Dec. 12 2007 12:27 AM
Marian Lizzio from New York, NY

Caregiving can permeate every part of your life. It can take over your life and swallow your life up in its neverending demands. After years of caring for my increasingly ill and disabled mother, she died last month. I miss her terribly but in many ways feel that my life can finally begin and I can find out who I really am and why I am here.

Dec. 11 2007 10:45 PM
Gene

My brother died last year. He was 12 years older than I, and had taken me into his family when my mother died when I was 17. So he was a combination father, brother--and great pal.

For the last 6 years of his life, I went to California regularly to help care for him, often for months at a time.

I was shocked to see that his children, whom I helped raise, preferred to wipe those years out of their memories. He hadn't been the father they knew and loved for a long, long time. Their sense of loss was tied to the old family good times, not his last lonely years. They felt he was better off now, out of pain, etc.

I wasn't nearly as ready to let him go. I deeply treasured this time I had with him, a time in which I was able to return some small fraction of all he had given to me. It was my chance to give back--a partial payment on a debt of love, returned at a time when he so desperately needed the smallest kindness. To know that he deeply appreciated it was terribly moving and rewarding.

One more note: The people who work for low wages taking care of our elderly are often absolute SAINTS. Legal or illegal immigrants, I don't know or care, Lou, because the way they devote themselves unselfishly to their charges, in the most extreme and hopeless situations, for little reward of any kind, is wondrous to behold.

Dec. 11 2007 09:10 PM
Kiera Nieuwejaar from Brooklyn, NY

One of the challenges in caring for a family member is the toll it can take on the rest of the family, especially children. This is particularly true if the illness is mental. My grandmother, who had schizophrenic bi-polar disorder, lived with us for a year when I was young, and it was often hard to understand why she behaved in the strange, sometimes embarrassing, sometimes frightening, ways she did. But the reward for that long year was that after it was over I saw my own mother in a completely different light - she seemed to draw from some bottemless well of strength in taking care of my grandmother while being a wife and mother to two unruly kids.

Dec. 11 2007 01:55 PM

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